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A Day to Think

Last Friday morning, bright and early, Floey and I had quite a discussion. This is how it went.

“Where were you, Mom? You were gone all day yesterday – from before breakfast till after dinner, almost bedtime. Our friend Kathy was here to take care of Carolyn and Ann and me. She even took me for a couple walks. But I missed you and Mim. Where in the world did you go?”

“Oh, I thought we’d told you, Floey. Mim and I went to the Olympia Resort and Conference Center in Oconomowoc.”

“You went on a mini-vacation, and you didn’t take me along????”

“Not exactly, Floey. Rainbow Hospice Care held its 12th annual End-of-Life Conference there. The theme of the conference this year was Respecting Differences at the End of Life. And they had some wonderful speakers. The speakers were so good I didn’t even get sleepy, even though I had to sit still and listen all day long.”

“How about Mim? Did she stay awake all day, too?”

“Just about. I think I saw her eyes closed once, but just for a few minutes.”

“Well, who were the speakers and what did they talk about?”

The Rev. Dr. John Touhey

“The opening keynote speaker was the Rev. Dr. John Tuohey. He’s a Catholic priest with a PhD in Ethics, and is the founder and director of the Providence Center for Health Care Ethics in Portland, Oregon. He introduced a four-part model to help in analyzing ethical dilemmas in end-of-life care. He used case studies to help us understand how the model worked and how valuable it could be. He was a great keynote speaker, but he was even better in the breakout session we went to next. We worked through a couple case studies together. One was about a young couple from Saudi Arabia who were in Portland, Oregon for a few weeks to learn English. While in Portland, the woman had a severe asthma attack and could not be resuscitated. In the hospital, she was declared dead neurologically, but her heart didn’t stop beating immediately, and her husband insisted that she be kept alive on the ventilator until he could bring her home to Saudi Arabia. To keep her on the ventilator would mean that a legally dead person would be tying up a critical ventilator and other scarce medical equipment for at least five days, during flu season in Portland. Other people could die because this equipment would already be in use.”

“Wow. That’s a tough call, Mom. How was it resolved?”

“The family was quite wealthy and politically connected. The embassy got involved, and the issue was transferred to a judge in a federal court, who ruled that the hospital must keep the dead wife hooked up to the equipment for the five days until she could be transported home. We had quite a discussion about what was the best action to take ethically. What it boiled down to was balancing the interests of the husband, who in his culture didn’t recognize deadneurologically as being truly dead and the interests of the greater good – i.e., the person(s) who may need access to the scarce medical equipment that was being used to sustain a person who was already dead according to the American cultural and legal definition of dead.

“Kindness was a word that came into the conversation a lot. Which course of action would demonstrate the most kindness – to the patient and the patient’s family vs. to the other people who would be affected by the decision.”

“It sounds pretty complicated, Mom. Were all the conference sessions that complicated?”

The Rev. Ridley Usherwood

“Well, the second breakout session wasn’t complicated in the same way. It was fascinating. The speaker was the Rev. Ridley Usherwood, and the title of his session was Recognizing and Honoring Cultural and Spiritual Beliefs around Aging, Illness, Death and Grief. His ethnic background was Jamaican, his upbringing was British, and his life experiences have been all over the world, being a pastor, missionary, chaplain in the USAF, and now teaching at the University of Wisconsin. This session was really an overview of differences in how people of different cultures view end-of-life issues – African American, Asian and Pacific Islander, Latino/Latina, and Native American. I wished his session would have been twice as long, he had so much to tell us. But a key theme he kept coming back to was kindness, just like in the first session. Given cultural differences, we need to understand how to treat patients and family members with the most kindness.”

“Mom, was this a religious conference? The two speakers you’ve told me about were both religious – one a Catholic priest and the other a Protestant chaplain and missionary.”

“Not really, Floey. It was a professional conference for people who work for hospice organizations or are in some way involved with end-of-life care, like us. These two speakers just happened to be religious. The speaker for our third breakout session was Dr. Ann Catlett. She’s a medical doctor and is currently on faculty at the Medical College of Wisconsin and at UW. She’s the speaker who really made me think the most.”

“Really, even more than the one who talked about the Saudi Arabian couple?”

Dr. Ann Catlett

“Yes. Even more than that. The topic of her session was End-of-Life Care for the Homeless and Other Marginalized Populations. She’s trying to get a small home set up in downtown Madison where homeless people can live and be cared for during their last few days, weeks, or possibly months of life. Think about it, Floey. Think about what it must be like to be homeless and sick and dying. You don’t have a bed to sleep in at night unless you can get to a shelter early enough to stand in line and hope to get in. You may or may not have a place to spend the day. You don’t have regular meals. You may not be able to see a doctor, but if you can, and you get medicine to help you get better – or at least feel better, you don’t have any place to keep it. And if you carry pain pills with you, you’re very vulnerable to having them stolen from you. I’d never really thought about what it’s like to be homeless and dying before yesterday.”

Homeless Jesus Statue

Floey’s eyes filled with tears and she sniffed a little. “Mom, that makes me feel so sad for those people. Is there anything we can do to help them?”

“I don’t know, Floey. That’s why I said the last speaker made me think the most. We’ll need to keep informed about the progress she’s making toward getting an Adult Family Home for homeless hospice patients set up in Madison. Dr. Catlett told us about Joseph’s House, a home like that in Washington, D.C. She spent some time there last year learning all that she could that might help her do something similar here.

“Floey, can you guess what key word Dr. Catlett kept coming back to in her presentation?”

“Well, Mom, by the way you asked the question, I bet the word was kindness.”

“You’re right, Floey. Dr. Catlett said that when her own dad was dying, she asked him what was the most important thing he ever learned from his dad. Kindness was his one-word response.”

“Hey, Mom. Kindness is your word for this year, remember?”

“I sure do. I couldn’t believe that every speaker yesterday came back to that word as being central to their topic.”

Floey responded, “Kindness is a good word for all of us to think about. While you were gone yesterday, all of us at home were kind to each other, even if we didn’t spend the day talking about it. I guess that’s what’s most important. I’m glad you had a good day, even if I missed you. I guess it’s important to spend time thinking about the need for kindness in our world, and what we can do to help meet that need.”